What Is Enough Gluten

[simplemom]

My son got tested for celiac due to problems with weight loss and not gaining weight over the past year. A year ago he went from 41 pounds to 39 pounds from fall-spring. His asthma had worsened beginning that fall, so when the MD noticed the weight loss a CF test was done that was negative. 2 months later after eating a higher calorie diet, my son weighed 43 pounds and we were all happy. My son had gotten synovitis from a virus the year prior, and my only concern after that was he started getting pain in other joints than the hip when he got a virus. His labs for rheumatoid arthritis were also negative. My son's virus 3 months ago ended with pain for 1/2 day in his elbow and shoulder and later that night my son complained of having stiiff fingers on one hand he couldn't move for a moment. My son said his toes did the same thing and he didn't like it. Since that virus, he hasn't had that problem. One month ago, my son got a virus with a fever, after 2 days he had a severe asthma flare and we had to rush into the MD office (would have gone to the ER if it was at night). Turned out being pneumonia. My son only weighed 42 pounds at the first visit that week, but the nurse and mD weren't concerned because he'd been sick a couple of days. 2 days later he went back to the MD for a fever and on the same scale he weighed 41.4 pounds. The MD asked me to bring him in for a weight check after he was fully recovered and eating normal for a few days. Over 2 weeks later and eating lots of good healthy food with healthy fats and a little junk at Christmas, he only gained 2 ounces. The MD says he might be a skinny kid, but due to a family history of autoimmune illnesses, he wanted to run lots of lab work to rule out a few things (thyroid and celiac being 2 of them, his stool samples were fine also).

All I knew about celiac testing was that one had to be eating gluten before a celiac test was done. My husband has a wheat allergy, so for 3 years I routinely make wheat free meals. I keep wheat bread in the freezer for the kids, and they do eat it a few times/week, also lots of wheat when visiting someone else and eating out. We eat mostly whole foods, and lots of fruits and raw veggies (green smoothies with spinach, kale, chard, etc....) because I am trying to get my son healthy. When the MD mentioned celiac test, I did a quick run through in my head of all the extra bread and cake my son ate during the holidays, the whole wheat tortillas wrap he ate that morning, and how he ate the Ezekiel bread several times over the last month. So I didn't tell the MD he eats less wheat than the average US kid. Labs came back celiac negative and all other tests okay, only a mildly low hematocrit. The MD told me all the high iron foods my son should be eating, and I told him how much nutritious foods he eats each day...lots of raw nuts of various kinds, green smoothies, we purchased a juicer when he got pneumonia and giving him straight carrot juice with greens or beets once/day, lean beef a couple times/week, black beans made from scratch a couple times/week, lots of raw spinach salads, etc....MD just said he wanted my son to take supplements and have his hematocrit/iron level checked in a month, he expects it to be higher after supplements.

I'm thinking my kid shouldn't have low iron, even mildly low (hematocrit around 33) with his diet. Then, my friend with celiac who knows we eat wheat free often and I rotate grains told me my son's gluten intake may not be high enough to pick antibodies. I told her all the wheat intake, and she said the mD should know I give my son wheat free pastas and breads just as much as wheat . So I humbly emailed the MD, and now the MD wants repeat the celiac panel in a month after my son eats a regular wheat diet (whatever that means). My son got extremely hyper, like he gets when he takes steroids for asthma, after a day eating wheat with most meals. After 3 days of the hyperactivity, I emailed the doctor to ask if my son was having a reaction to wheat and should I be concerned about him getting sick continuing to eat extra wheat. The doctor replied to back off wheat, he's not concerned about a false test, just wants my son to have some exposure before testing. I'm so confused! I feel like a hypochondriac mom.

My husband and I are thinking the first celiac test was accurate, and expecting the next to be negative since I never took wheat out of my son's diet. Also, I would think once my son started loosing weight last year, he wouldn't keep regaining it and loosing it, and regaining again. I would guess he would slowly or rapidly steadily loose weight with each weight check. Was my friend right that my son may not have had enough wheat being that he eats less than the average US kid, even if he ate wheat every 2-3 days on average (sometimes everyday, and a few times a year he eats regular white bread most meals at grandma's or camp)?

Would anyone expect a 7 year old child's iron level to be low if the child eats lots of high iron foods, doesn't drink milk, and eats lots of high vitamin C fruits and veggies throughout the day? If my son didn't have pneumonia twice in his life, didn't get joint pains with some viruses, didn't have night terrors as a toddler and preschooler, and if he wasn't the DNA replica of his dad who has had a major autoimmune illness as an adult and lots of inflammatory conditions including food allergies I could accept the Dr.'s assessment that I just have a skinny energetic child with a high metabolism. Thoughts anyone?

[NoGlutenCooties]

Hi Simplemom and Welcome to the Forum!

 

It's hard to say how much gluten is enough... and I'm not very familiar with kids but I seem to recall that it can take awhile for kids to develop enough antibodies for it to show up in the tests and for them to develop the villi damage in the small intestine.  I did find this article on potential causes for iron deficiency in children:  Open Original Shared Link  - maybe something in there will resonate as a possibility?

 

After the follow-up test, you can always try a strictly gluten-free diet and see if your son's health improves.  To me, that's really the "gold-standard" test.  Keep in mind it would be possible for your son to have non-Celiac gluten intolerance which exhibits all of the same symptoms as Celiac but without the villi damage - and there's no test for it yet.

 

Some of your son's symptoms sound similar to what a friend of mine has been experiencing - any chance your son may have contracted the Epstein-Barr virus?  For some people, the virus hangs out in their system and continues to reak havoc. 

[simplemom]

Thank you for the reply, it is very informative. I read the IDA link. I am thinking his iron level would be low due to malabsorption. I can't recall that my son had EB virus, although he did have a couple sore throats with a slight fever a couple of times as a toddler (strep negative). I will keep that in the radar. Thank you for taking time to read my post and offer information.

[NoGlutenCooties]

From what my friend told me, most people come in contact with the Epstein-Barr virus and never know it - they just get rid of it as their body would any other virus.  But for some people, the virus continues to hang out and cause problems, especially fatigue over time - and it can stay in your body for decades.  There is a bloodtest they can run for it.  (Probably a long shot, but thought it might be something you could look into.)